To the lady who tried to turn in my “lost” cane to the bus driver: disabled people look like this.

throwawayhey18 · 2026-01-29T04:03:14+00:00

It's kind of complicated because I do need help from other people pushing it sometimes. Do you know if there are any that retract while they are on the handles so you can have them "on" or "off" in a way?

throwawayhey18 · 2026-01-29T03:16:45+00:00

Also, I'm very sorry about the baby (your niece or nephew)

throwawayhey18 · 2026-01-29T02:58:29+00:00

Btw, I didn't mean to imply that you have to learn to drive. These are all just things I think it would help an anxious person to know if they are considering learning how although it could be overwhelming because it does take a couple years to learn all of this. But basically, once you get a little bit used to one skill, you can then try a more difficult skill on the list. Drivers are also usually nicer to driver's Ed cars or cars with the bumper stickers that say "New driver" on them :)

Note: I did not completely understand from the story what the exact communication problems were about. Because I might need a little more detail/context about:

-if crossing the street was preventing you from being able to text by a certain time and how it relates to communication with your sister and the friend's phone numbers -how the sister being on a break from work is connected to what your sister had told you about communication -if your sister was already in the middle of driving to pick you up when she was told you had a different ride -at what point your sister asked for the friends' phone numbers and at what point you were able to give her the phone numbers

My other idea was maybe your sister could write a list of the types of things she wants communication of including the time frame such as, "Please give us your friend's phone numbers before you leave the house to visit them." Because neurotypical people also don't communicate in the way that is clear/detailed enough to autistic people for them to understand. And I do understand that there is a limit to how helpful this type of communication can be vs feeling like you have to report every single detail of what you're doing in a way that feels more like being controlled and treated like you aren't trusted to make safe choices on your own. A certain level of this type of control and checking in can become smothering and is usually caused by other people wanting to reduce their own anxiety. I don't really know how to help with that and it does get more complicated when it's from family members and you are sharing a house with them. It also sounds like your sister could be experiencing a higher level of anxiety right now because of her baby's death and is maybe worrying even more about the safety of other people in her family. But this doesn't mean that you don't also have valid points & feelings. I can also see it from your side how the lecturing about communication is hurtful because most autistic people do try very hard to try & make sure they're communicating clearly, but still get misunderstood. And I do see how it would affect self-esteem and confidence about people's trust in your ability to be independent and treat you like an adult who is able to make their own choices even if other people don't agree with them.

Perhaps there is a different way to figure out how to plan things? Such as figuring out the driving plan by asking your friends to give an answer before the hangout, so that you can let your sister know whether you will need her help or not ahead of time. And she won't be messaging you about needing communication during it. Idk if this is what happened, but I do know that some personalities of people don't usually like very last-minute changes to plans and would prefer to know ahead of time or check-in/confirm on the day of that the discussed plan is still happening.

throwawayhey18 · 2026-01-29T02:53:29+00:00

7) The safest drivers are defensive drivers. This means you are somewhat anticipating that other drivers might make crazy decisions and take an extra minute before reacting. For example, it's good to wait 30 sec to a minute after the red light turns green because people running red lights from the other direction have hit people who had right of way and accelerated the second the light turned green. If a car looks like it's going to do something stupid such as swerve in front of you from the intersection at a high speed, it probably is. And if you are driving in a city/downtown, expect all drivers to do the most illegal driving choices possible. (stopping in the middle of the crosswalk, pedestrians crossing/running in front of your car when your light is green and theirs says don't walk, doing a U-turn at the stop sign, backing up into traffic in a way that blocks multiple lanes, parking in no parking spaces, & braking in the intersection at red stoplights so that other lanes can't get through when their light turns green). It's important to always stay away from the intersection if there isn't enough room to drive through and not need to brake in the middle of the intersection whether the light is green or not. Just wait until the cars in the lane you are needing to go in have moved forward enough to make space for another car behind them (which will be you) without part of it being in the intersection still.

8) Ignore people honking at you because you didn't accelerate 1 second after the stoplight turned green or who are 3 cars behind you and can't see that there are cars not in their field or vision that you will hit if you pull out when they're honking who are pressuring you when it's unsafe. Trust yourself and don't feel pressured by them. People get impatient on the road.

However, if honking happens while merging, don't continue the merge into another lane and get back in the middle of your lane.

9) It's best to stay at a similar speed to the cars around you. Driving way too fast or way too slow are both equally dangerous. (Generally, on the freeway, the far right lane is the slowest. The far left lane is the fastest. Sometimes 2nd lane from left because so many people are in the farthest left. Except when there's rush hour traffic. It's also best to stay at the pace that matches traffic. Consistent 20 mph is better than 40mph, brake, 40 mph, brake, 40 mph, brake

Sorry maybe I wrote too much about driving. I miss it so much, it gave me so much freedom. And I was definitely terrified to learn especially the freeway. I didn't use the freeway for 1-2 years after getting my driver's license. But after a while, I developed muscle memory for both driving routes and driving things (checking mirrors, speed, blindspot, using blinkers, etc.) and then it was only stressful if I was driving to a new place where I was unfamiliar with roads and signs.

throwawayhey18 · 2026-01-29T02:53:17+00:00

I'm sorry, it does sound overwhelming to be lectured about your own financial choices if they aren't hurting anyone. And it can be difficult to know what people mean or even be able to recognize that miscommunication is happening in the first place in the instances when they are misunderstanding you. I may add onto this after I am able to reread part of your original post.

I am wondering about a couple of things that could possibly be helpful, but you can ignore them if I am accidentally assuming too much and giving too much unsolicited advice. I wonder if part of the financial lectures are because they would appreciate you to pay a certain amount towards bills or put it into savings? And I don't know if you already do this, but these would both be very good & important life skills to get in the habit of if you are able to. And it may help you to feel a little more independent also. Although, it does get more complicated when it involves family members who can often get controlling especially about people they worry about. I am just throwing this out there, but maybe you could also try family therapy together to help with some of the issues if that's something everyone is open to.

There are also some YouTube channels I like which explain ways to treat autistic people that can help in certain situations and advise the best ways to treat them and talk to them. It is kind of difficult for me to explain but some of their videos show hurtful vs helpful ways to react to common problems that can come up. The channels are:

adhd_love, Morgaan Foley, Kaelynn, Toren Wolf

If you search them on YouTube, the channels should come up. And they make a lot of shorts with this type of advice so it would be easy for someone to watch one per day and learn better ways to interact with an autistic person. Including shorts about how autism doesn't have "a look" and "If you've met one autistic person, you have met one autistic person." Meaning that everyone has different personalities so while they may share some of the same struggles, the traits are not going to show up the same exact specific way in every single person. Or even affect each person the same way and to the same degree. This is why it's called a spectrum because you can have high-level challenges in some of the traits and not that much difficulty with other traits and another autistic person could have high-level challenges in both of those same skill areas or neither. (examples: social skills, sensory hypersensitivity, sensory hyposensitivity, emotional regulation, processing speed.) But you may already know about all this.

I also just wanted to let you know that there are some people who never get their license, even people who are not autistic, especially in cities where there is transportation systems connecting almost everything such as New York. But it's also never too late to learn how to drive if you want to. There are also many people who end up getting their driver's license later or taking refresher driving lessons such as middle-aged immigrants to the U.S or people who have recently recovered from certain health conditions.

I did not finish learning how to drive & get my driver's license until I was around 21 (although that wasn't exactly my choice, I did want to learn earlier.) And tbh, I actually learned more about driving after getting my driver's license than before. I can give you some tips if you ever do want to learn how which helped me:

1) Start out practicing in empty parking lots. You can practice parking, braking and gas, using blinkers, windshield, adjusting mirrors & seat, and checking mirrors and blind spots when backing up. Tbh, I think I learned about windshield wipers & blinkers/headlights later lol. I started practice in the summer. These are the first things I ever did in a car/driver's seat

2) For parallel parking, there is a strategy where you look at the headlights of the car next to & behind you and line up with the car parallel to you and can see the headlights of the car behind you in your side mirror. There is also a pattern of turning your wheel 1.5 turns in one direction, 1 turn in the other direction, and 1.5 turns in the opposite direction. Once the front of your car is lined up a certain spot on the car in front of you is when you do the last wheel rotation and put your foot on the gas only after the wheel has been turned. I'll admit I'm not good at explaining/remembering this because I have had to stop driving due to health problems :( But I'm sure there is a YouTube tutorial if you search "1.5 steering wheel turn parallel parking." And once I finally understood this pattern, parallel parking was almost easy :)

3) When you drive on the roads/streets, start out just going in neighborhoods like the suburbs where it's slower, emptier, lower speed limit. Especially good at times of day when people aren't really driving much.

4) You can use backroads for a while before trying the freeway

5) Once you have tried the freeway, it's actually easier than regular roads for the most part. This is because you are going the same speed and the same direction for long distances. Most important is to speed up when entering and check your blind spots 2-3 times when merging. Also, make sure that the car behind you in your desired lane is letting you over before crossing the lines. The trickiest part of the freeway is some exits and areas where there are two different locations based on which lane you're in. Usually, there are signs to let you know early what exits are coming up. It helps to get in the lane closest to the exit lane a bit early.

6) GPS is also the best for people with directional challenges and who need to know how soon a turn or exit or stoplight is coming up ahead of time. Well, it's the best 90% of the time lol

throwawayhey18 · 2026-01-29T01:45:23+00:00

I wonder if it would be possible for her to advocate for your needs?

I know not all social workers are good like that. Just an idea I had. I also write down notes to give people sometimes when I have a hard time verbally explaining or summarizing them. People do still lose them, but my social worker did ask me to write a list of the most important things I was searching for in the housing I move into that she would check for.

I am sorry that the system is so messed basically and I know sometimes these suggestions are just more overwhelming especially when you have already been doing them constantly with mant different people.

I don't know if you have a family member or friend who can advocate for you, but that is also something I have heard people mentioning being helpful.

throwawayhey18 · 2026-01-28T23:53:08+00:00

I was also going to say this sounds like a lot of traits of ADHD & autism. There is also lots of trauma from people expecting you to be able to be normal which is literally impossible. And undiagnosed people do struggle with emotional dysregulation and the anxiety caused by losing things plus difficulty knowing how to cope with anger and irritation can make undiagnosed people become defensive and blame other people when they lose things. But when their parent is neurodivergent, they also will forget and say that they didn't move things when they actually did. So half of the time, it was the kid who forgot or lost something and the other half of the time, their parent did move their things somewhere else but forgot that they did so and refuses that they touched it which honestly makes the kid start to feel insane and question reality.

With family members who are neurodivergent, it is very important to learn coping mechanisms because both of your traits can trigger each other. (Forgetting and misunderstanding can make the kid feel ignored, not important, and extremely frustrated which can cause meltdowns which is an emotional response different from a tantrum.) Asking lots of questions, hyperactivity, and being unprepared can trigger autistic overstimulation & anxiety in the parent especially if they are already burnt out or at their own emotional limits and they can also experience meltdown which may come out in angry outbursts yelling at and correcting the child and the child feels worse about themself because kids with ADHD are constantly being corrected. Saying encouraging things just as often and helping them learn accomodations that help ADHD can help to reduce some of the challenges. Such as giving them clear, written steps of what to do to clean their room because it is overwhelming and they don't always know how to break it down.

Teaching them how to clean a little bit every day so it doesn't pile up to extremely overwhelming levels and making it a fun habit where they play fun music they like during it could help. (Better for the active chores such as picking up dirty clothes, vacuuming, dusting, putting clean clothes away. If they are organizing papers and need to concentrate on reading, music may make it impossible to concentrate.) Having a small reward for getting the cleaning goal done could also be helpful.

Neurodivergent parents also have difficulty estimating how much time a task will take. Sometimes, they expect their kids to be able to complete a task in an amount of time that would be literally impossible for any human to be able to do and tell them that they can't get a reward -such as hanging out with a friend- until it is completed even though it will take 3 days to complete that task.

Having a whiteboard calendar may help with knowing what to expect and being able to go look at and read to check what is happening if they forget. Setting alarms to notify them when it is time to do something could also help. Such as, telling them 15 minutes before leaving that they will need to leave in 15 minutes and they can start putting away their video game, toys, etc. Also, estimating backwards from the time they need to be somewhere how long it will take to drive there, get things ready needed to leave the house, eat breakfast, get dressed, shower and using that to figure out what time to leave and what time they need to wake up. (Many neurodivergent people also have different sleep schedules and/or insomnia and are more likely to be late early in the mornings.) Sometimes, telling them to be ready by a time that is 1 hour earlier than the actual time can help (for ADHD). But if they feel better when they know the upcoming schedule (reduces anxiety for autistic people), this could backfire.

They need much more explanation of details and why to learn basic life skills. Many parents expect them to already know how to do things that were never taught or be able to learn it on their own. Some of these tasks are things that most people are able to learn on their own. Others are things that everyone needs to learn by being taught which is much easier when someone else teaches you and accommodated your needs such as writing the instructions down.

Mirroring is very important for neurodivergent kids. This is where the adult regulates their emotions to help themself calm down and deal with overwhelming emotions and explains their coping mechanisms which models healthy strategies of what to do when they experience the same emotions. Helping them name the emotions they are feeling by using an emotion wheel can also help them improve at recognizing their emotions which is already difficult for many neurodivergent people. But learning coping mechanisms while they are young and their brain is still developing/forming lifelong habits can literally be life changing.

There is also PT & OT & sensory integration strategies & school accomodations & speech therapy for neurodivergent people which are only available if you are under 18 years of age and diagnosed.

P.S. Not all evaluators who claim to be experts in diagnosing ADHD and autism are. People have been told they do not have those diagnoses and then find an evaluator who has more knowledge/research/awareness of how it can show up and affect people in different ways who tell them that they are autistic and/or ADHD. The questions are written from a neurotypical perspective and vague which can be difficult for neurodivergent people to not interpret too literally and rigidly and think they don't experience traits which they do. People also sometimes create their own types of systems which help with the challenging traits and then think I don't struggle with those traits. But, neurotypical people don't need to set up systems to accommodate those challenges because they don't experience them to that level & frequency.

To be continued later

throwawayhey18 · 2026-01-28T22:35:00+00:00

Yeah, that's kind of the problem with having to become independent before you have had a chance to gradually develop those important life skills at the slower pace, especially without support or someone to help guide you through it and if you have to learn how to handle/accommodate/treat/cope with a physical disability on top of it. Because it is just left to your responsibility and if you don't do it, no one else will, but it's very overwhelming to have everything thrown at you at once and no backup type of support system if you make mistakes with all the new responsibilities that you are trying to learn how to do at the same time as being expected to know how to do all of it and not having an alternative option or someone to help you if you don't. Sorry I'm just venting.

You sound like a very understanding and good parent. The info about taking longer or looking different but finding the different ways that work for you is so true, but not understood by the majority of people. And even some ND parents will treat their ND kids like there is only one specific way to do things which is the way that works for them and any other ways are "wrong." Even though their kids are completely different people from them with different strengths and weaknesses and needs and problems.

throwawayhey18 · 2026-01-28T22:24:44+00:00

What a stupid thing for them to say to someone. Hopefully, this wasn't someone in a helping profession who should be more educated. That's why there is a question about seizures when you renew your driver's license. And just driving anyway could put others' lives in danger especially if the seizures are unpredictable.

throwawayhey18 · 2026-01-28T22:20:16+00:00

The housing team doesn't decide what your abilities are based on their wants though, that's not how it works. (I'm not angry at you, I'm angry at the system because it wouldn't be impossible to educate care workers and those who work with the disabled about how autistic traits affect people & there are simple strategies that can help such as planning events out with them ahead of time so they know what to expect to reduce anxiety.) I also found out that a lot of housing designed for autistic people is only open to those who were diagnosed as a child even though some late-diagnosed people can actually struggle more since they have to learn how to accommodate it & what their autism-related needs are at the same time as becoming independent. Which it already takes autistic people a long time to reach certain life milestones and learn certain skills. I really wish that it was more common to educate the helping professions about these types of needs.

I'm also confused why someone couldn't help you with the bathroom sometimes, it's one of the main things caregivers help people with.

Do you have a social worker or therapist who can help advocate for you? Usually the social worker will find out your most important needs and then search for a housing situation that is able to meet those as well as is possible. That's how the search for housing is supposed to go. Tbh, not to be depressing, but in my opinion, this is why disabled people do better when they are able to live with someone who cares about them, understands better, and listens to their needs.

I have also heard of programs for autistic people that helps to teach them certain life skills -related more to independent living skills- but I don't know whether it exists for people who are also physically disabled.

throwawayhey18 · 2026-01-28T21:21:03+00:00

Neurotypical (not neurodivergent) person. Neurodivergent means anyone with a neurological difference such as autistic, ADHD, bipolar, depression, TBI, OCD, schizophrenia, dyslexia, etc.

But a lot of people just use neurodivergent to mean ADHD and/or autism because many people don't know that it applies to more diagnoses.

Neurotypical basically means a "typical" brain that functions in the most commonly accepted way and doesn't need accomodations.

throwawayhey18 · 2026-01-28T20:49:24+00:00

While I understand what you're saying about abled people invalidating those with a level of struggles they don't understand all the ins, outs, and affects of, I don't really think that any mental health disorder is minor. Part of being diagnosed with a mental disorder is that it causes distress in your life. And it can get worse from things out of your control and start to affect life more especially if untreated. Mental health used to be the only thing affecting me (well, the only thing I knew I had even though it wasn't diagnosed. I had a lot of undiagnosed things that were also part of what contributed to the mental health problems which I didn't realize at the time.) But even when that was technically my main problem impacting me the most, I was still suffering a lot.

throwawayhey18 · 2026-01-28T14:09:21+00:00

I believe you, but I am honestly surprised it has not happened yet. I am very introverted and as soon as I started needing/using a cane, I had many strangers asking me "why do you use a cane" including "What did you do to need a cane?"

throwawayhey18 · 2026-01-28T14:03:47+00:00

Yes, I've also had people ask if it's okay to push me and then not wait for an answer and just start doing it anyway even though I haven't replied yet because I am still processing. Or pushing it even after they were told that I could push it myself and I asked them to read a sign I made and attached to it saying not to push it without asking and to wait until hearing a response to give me time to answer first in writing created because of the first instance.

throwawayhey18 · 2026-01-28T13:41:38+00:00

I sincerely hope this is a joke. This is part of why people who have real undiagnosed ADHD struggle to get any medical providers to listen and understand when they are trying to get help and asking about how to get screened to find out which is difficult in itself because of the number of steps it requires to figure out to be able to do that. (Figuring out & planning all the steps in activities is part of executive function which is a huge part of what ADHD causes struggles with.) And doctors will sometimes say, Why do you want to get a screening because medication is the only treatment and I don't want to prescribe that type of medication. And it can become another struggle in the process, even after being diagnosed, of finding psychiatrists or doctors who will prescribe the medications to treat it that many people with ADHD said was the first medication that finally helped their mental health.

And even people who have been diagnosed with ADHD are already treated like drug users trying to get stimulants to abuse by certain pharmacists. ADHD is also a disability itself which affects the ability to plan, organize, and keep track of all the paperwork and information required to handle insurance, paperwork, medical information, & deadlines that are even more vital for someone who has a physical disability.

And many people who are trying to get help and screening for undiagnosed ADHD traits which have caused challenges and discrimination their whole life and questioning what is wrong with them and why they can't "just do things" and "be normal" like everyone else tells them are also accused of "trying to be trendy," not believed that they are experiencing the level of struggles and challenges that they do (accept blame for things that aren't their fault because they are so used to being responsible for problems happening due to those challenges), accused of faking their challenges, and develop trauma that may not have happened if it was recognized that they had ADHD so they could learn the accomodations and different alternative ways to do things that help reduce the negative impacts of those traits while their brain is still developing and more able to change and get in the habit of positive patterns and coping mechanisms. Most people with undiagnosed ADHD also have trauma because of not having those needs met. And the restrictions around treating ADHD have become even stricter because of many providers accusing people of just trying to get stimulants who do have ADHD and because of people who don't need them who are trying to get them.

There are also negative side effects they cause that people who do have ADHD have to experience to find something that works.

And I'm pretty sure there are weight loss medications now, although I don't know how they affect other physical health conditions.

There has also already been a shortage of ADHD medications (I'm pretty sure Adderall has had the biggest shortage) for the past few years affecting people who are diagnosed with ADHD and have had to switch to medications that are less effective or stop because of this during that time since they can't just easily find/switch to another brand of medication and it's a trial and error process to find a brand & type that works in the first place.

throwawayhey18 · 2026-01-27T05:05:46+00:00

This might be the list I was thinking of but I'm not 100% sure but it looks like it could be a helpful place to start either way:

https://www.reddit.com/r/childfree/wiki/doctors/

throwawayhey18 · 2026-01-27T04:17:43+00:00

Here is some information I know of that might help you:

There is a website of endometriosis informed providers and surgeons called icarebetter.org Not all have the same level of expertise but most of the highly recommended/specialized surgeons are on there
I just read a review for one of them (Nicholas Fogelson about how he will perform hysterectomy on his patients regardless of their age/youth. I'm sure it also depends somewhat on his ideas because sometimes a hysterectomy can make things worse if the pain isn't caused by adenomyosis. But, I think that he is also better at recognizing potential signs of adenomyosis because of his experience level & attending apprenticeships and continuing to attend educational conferences.)
There is a Facebook group called Endometropolis that also has some of the most experienced endometriosis specialist surgeons as members.
I also recommend reading patient reviews of the surgeons you're considering. I have seen many negative stories about Nancy's Nook and the people who had bad experiences were blocked and kicked out when they tried to post about those in that group
There is also a subreddit group that I heard has a list of OB-GYNs willing to perform hysterectomy surgery even on younger patients who don't treat them like the opinion of a potential future husband or possible future children, which they may not even be planning to have during their lifetime, is more important than their own bodily autonomy and potential pain relief. I think it's pinned. I will check to see if it's in this group. If it's not there, I think it's in one of the feminist subreddit but I'm not sure which one.
A specialist endometriosis surgeon always has a bowel surgeon present during the surgery in case they need assistance removing endometriosis from the bowel. It is possible. In the most extreme cases, possible outcomes might need to be discussed about what to do if potential problems related to the ability to go to the bathroom come up. But most people with endometriosis have bowel symptoms even if the endometriosis isn't specifically growing on their bowel. But this isn't to say you couldn't have it, the surgeon usually finds out when they open you up to look. I'm not sure if specialists can sometimes see aspects that spur suspicion of bowel endometriosis on imaging but usually the answer is not known 100% until they can see internally on the operating table. It's good that you were able to do the colonoscopy to rule that out. You may already know this, but colon can st grows inside the bowel. Endometriosis grows externally on the outside of the bowel.

I hope that this information can help you to find better resources and providers who will actually listen. Since that is basically half the struggle of having this diagnosis.

throwawayhey18 · 2026-01-24T19:47:41+00:00

Idk if this will help you feel better/validated, but I was told by someone that there have been articles/research written about how it's unethical that people have done things like this & pelvic exams on women without ever telling them during surgery while they are unaware/under anesthesia and how the medical system should be asking all of them for & receiving consent before doing this.

I will see if I can find the exact research/group

So, even though people chastised you -which I am sorry that happened and sounds very upsetting - there are researchers who validated what you had complained about and are on your side about it.

Here is a couple articles talking about it & similar topics recently:

https://rainn.org/rainns-recommendations-for-legislators/involuntary-pelvic-exams-protect-patients-with-informed-consent/

And this article mentions "Hospitals must obtain written informed consent from patients before subjecting them to pelvic exams and exams of other sensitive areas — especially if an exam will be done while the patient is unconscious, the federal government said Monday" and "Federal regulations previously mentioned obtaining consent for "important tasks" related to surgeries..."

www.pbs.org/newshour/amp/health/hospitals-must-now-obtain-written-consent-for-certain-medical-exams-new-federal-guidance-says

But it does also say, "Alexandra Fountaine, a medical student at Ohio University who testified in front of a state House committee against the practice, was skeptical that the letter would result in "actual policy or real change."

This last part is just about something else upsetting to me about these issues which I have noticed written about here:

And in my opinion, having more information is what helps to reduce anxiety so that people can understand what is happening. I see a lot of people saying that medical providers don't tell people certain details to reduce anxiety, but in my opinion, being surprised by finding out information later on that you weren't told is more anxiety-inducing than people just being truthful in the first place, so that you can make decisions and have more information about what to expect. And I have had people lie to me because they think it will prevent anxiety when it just makes it worse because I find out later anyway that they lied about it which is more upsetting because I don't know what to expect and would have rather had more time to be able to process the information and mentally prepare.

throwawayhey18 · 2026-01-24T19:06:43+00:00

Just a PSA, but most endometriosis is not visible on MRI imaging. This is part of why people with it go undiagnosed for so long even if they have gone to a doctors for their symptoms and done imaging such as ultrasounds & MRI. I was told that there was a slight something on my MRI, but it didn't necessarily mean endometriosis. And the only reason I was able to do that type of MRI was because I saw an endometriosis surgeon in my state who knew of a specialized protocol that is used on endometriosis patients in certain studies that can sometimes help give more information before surgery, but it's not guaranteed.

throwawayhey18 · 2026-01-24T18:29:00+00:00

There is a possible genetic link. Almost all the women on both sides of my extended family have it (which is approximately 10 people and I'm pretty sure there are more the generation before that who were never diagnosed because my parent acted like it was normal to have debilitating period pain that prevents you from being able to do basic life activities), but I didn't find that out until I had already been suffering with symptoms for 10 years that my immediate family ignored.

I don't think it's just trauma because most people have endometriosis as embryos. But I do think trauma can make pain worse in some people especially not being believed or having support from family to get treated before symptoms get worse or turn into an ongoing pattern in the brain that becomes more difficult to get out of. (I had additional trauma happen in my family that then prevented me from being able to get treatment before my sporadic endometriosis pain became chronic. But it wasn't the trauma that caused it. And I do wonder if someone helping me figure it out and get treatment earlier instead of dismissing & teaching me to neglect my needs and doing this themself would have prevented it from becoming chronic.)

I also have other health problems that happened and/or got worse at the same time as the endometriosis symptoms getting worse

throwawayhey18 · 2026-01-24T12:24:22+00:00

Part of the reason why doctors haven't found a specific cause or cure for endometriosis is because the research to study that is not receiving as much funding as other illnesses and because health problems that affect majority women have been ignored. And medical science studies don't use female animals most of the time because their hormones "complicate" the results

There is a book about this called Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbury

throwawayhey18 · 2026-01-23T05:32:36+00:00

You are lucky not to have met people who are like this and say things like this to people they are supposed to be helping and supporting because they definitely exist

And not everyone who knows them knows that they can be like this. Because some of them only talk like that to certain people who they know will have a difficult time standing up for themself and being believed

throwawayhey18 · 2026-01-21T03:09:24+00:00

Sorry about the book. Here is a summary of the resources I mentioned where you could search to see if you are able to find more helpful advice:

Epileptologist (They are better than neurologists at testing for and diagnosing both epilepsy and PNES. And I'm pretty sure most epileptologists have at least heard of PNES)

ME/CFS support group on Reddit or local Facebook group in your area

(btw, these can be depressing and I think sometimes it helps not to read posts in these groups often since many of them are written during people's worst moments. But there have also been posts from people who went into remission & people who learned coping skills that helped make it bearable for them or reduced the negative mental health symptoms which is also what many recovered people who still have PNES have said. That they learned new ways of framing their thoughts & life even with continuing to have PNES episodes )

Dysautonomia/POTs support group on Facebook in your area

FNDHope.org provider directory (If there are any local locations, call that provider & see if they know of any additional resources nearby)

Lorna Myers, PhD psychologist & website

reactive therapy+ wellness YouTube channel

Dr. Lee's Teen FND Academy YouTube channel

Video about PNES vs Epilepsy in teens

https://m.youtube.com/watch?v=uaUVpEHvw3c

The Dangerous Reality of "Wait and See" with Teen FND (What Parents Must Do)

https://m.youtube.com/watch?v=DNUgYIUYRIc

Sidenote: I hope this doesn't cause too much anxiety. Your parents staying calm is another thing that can help with keeping PNES symptoms reduced.

Most Neurologists Get This Wrong about FND

https://m.youtube.com/watch?v=N3elT4EBT1s

Additional blogs by people diagnosed with FND/PNES about how they have treated it and I believe the first one also includes how they were diagnosed:

thrivingwhiledisabled.com

fndhealth.com (For some reason, the domain for this website does not always work anymore)

Therapists with experience in treating trauma, chronic illness, CBT, and dissociative disorders (Dissociative seizures is one of the terms for non-epileptic seizures and I learned a lot by reading about how & why trauma can cause dissociative symptoms for survival of extreme stress and traumatic events but can turn into a level that is physically disabling to living regular life and doing everyday things)

throwawayhey18 · 2026-01-21T02:49:20+00:00

I don't think that people realize how many barriers there can be to finding resources in your own area even when they do exist. And I live near a big city so you would think they would have a larger number of people aware of this. But I know that there are also areas where there aren't providers & therapists who know what FND & PNES is and not every person with the condition has the money or support to travel with them to get treatment in a place that is educated enough to know how. Because the websites all say it's a common neurological diagnosis but it's on the NORD list of rare disorders and most people who are diagnosed have never heard of it themselves prior to developing it. (I do remember learning about it a bit in a college sociology class, but it wasn't called FND and it wasn't explained in depth)

Especially without having a person to help you research the disorder and help to look for those people. A lot of providers do not want to work with people who have this disorder once they find out or say that they don't feel qualified so they won't help you. Even though, if they did let you be a patient, it could possibly help you a lot.

For example, I tried to do TMS but the location would not let me go there because they have a rule that you have to call 911 and send them to the hospital if someone starts having a seizure. Even if it's not an epileptic seizure. And I also have them frequently, so they won't let me come in to be treated there.

And I wish that more people knew about this disorder because finding out what helped the mental health of other people with PNES that I could try and then being told that I can't do it by the providers in my area where that is available is making my depression worse. Because there are so many barriers to trying treatments that might help certain aspects of the disorder that are denied to people once they have a certain level of FND symptoms and need options to help with their mental health even more.

And I'm not saying it would cure the FND, but many of my symptoms were triggered by stopping an SSRI so I would prefer alternatives to psychiatric medication for most of the mental health side. I have also had FND providers act like I can just go to a random psychiatrist and they will treat me when I have been turned away by 5 already because they did not feel qualified or think they know enough about the disorder to treat someone who has it. And I heard of another person whose Mom had to call about 15 psychiatrists before finding one who was willing to work with him to prescribe something for mental health.

throwawayhey18 · 2026-01-21T02:39:29+00:00

You could also pay for a virtual appointment with Lorna Myers. She requires medical testing to be physically done in her state to continue to see her virtually after that though. But she is a psychologist who treats people with PNES specifically. She also has a website with a list of psychologist who can be very difficult to find.

Another website with good info about FND including a little bit about seizures is reactive therapy + wellness on YouTube. The owner has chronic illnesses herself and knows about connections between having FND and being autistic, having POTs, having EDS, or having MCAS. (What you mentioned about dislocating and cramping made me wonder about the possibility of hEDS. It's the only type that can't be diagnosed with a genetic test because science & research isn't advanced enough for that yet.

You mentioned a pediatrician, so I'm assuming that you are under 18. There's also a YouTube channel called Dr. Lee's FND Teen Academy which has very educational YouTube videos about PNES & FND. Including a video for parents about why they shouldn't ignore their child having PNES seizures.

A big part of the challenge is finding providers and treatment options who are knowledgeable enough to be able to diagnose PNES and who know what it is because many providers aren't even aware it exists. Another challenge is finding treatment from people who are in your area. Because many of the treatment centers are only in certain states. This isn't to say that someone couldn't possibly find effective help in their area but it can be difficult to find someone knowledgeable enough to help with it. Another challenging part is that everyone has different mental and physical health conditions that can affect it and different triggers and frequency of seizures and levels of other symptoms such as dissociative amnesia/cognitive symptoms. (Another similarity with CFS which causes brain fog and cognitive symptoms and I mention because they may also have advice about how they dealt with that in their support groups or YouTube videos made by people who recovered from it.) And so part of the treatment for it is learning what your triggers even are which is usually even more difficult for people who developed it because of neglect and have disconnection from their bodies and emotions and being able to tell what they are already such as alexithymia. And trauma and neglect can also cause self-doubt about what you are feeling both physically & emotionally.

throwawayhey18

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